Grabbing teardrops from the sky

Being the parent of a medically fragile child can be like riding a roller coaster with a blindfold on. As you are riding along, the breeze flowing through your hair, all of the sudden you are rocketing downward, screaming, body flying and being jostled from side to side, then a sudden stop where your stomach feels like it's coming into your throat. Then other times, the ride is going along smoothly, rolling hills, laughter and joy. It feels blissful and warm, peaceful almost.

You never know what to expect. In some ways, parenting a medically fragile child is similar to parenting any child. In some ways it is quite simple, you get accustomed to the medical part, you become a professional of sorts, while balancing the constant surprises.

In my small MTM-CNM community, there is a sense of interconnectedness. I don't want it to seem that everyone gets along swimmingly. It's a group of families brought together by children who have the same disease. There are many personalities that come to the table, but, not matter what, we stand by one another, when our children are sick, we celebrate every small accomplishment. It is a family, of sorts.

One of the most difficult parts of being the parent of a medically fragile child is the loss. The personal loss of having your child live a "normal" life, grieving over years as other children reach milestones that your child will never reach. I think about when Javad was young, I had a niece near the same age. She was a beautiful child (still is), but definitely a constant reminder of what Javad wasn't doing. Some misinterpreted my sadness as anger. I wasn't angry, but rather grieving. I never saw my son running in the rain, playing sports, having a sleep-over at home or at a friends. Javad  doesn't go anywhere without an adult. He doesn't have the same experiences that others do and it's ok. Javad has had a variety of other experiences that are unique to him, ones that many other medically fragile parents understand. Javad has made many friends, has impacted lives beyond what is imagined. Although Javad doesn't speak, he has a voice!

As parents we have to confront the reality that we may lose our children. The sheer number of children lost is often overwhelming. Since Javad's diagnosis fourteen years ago, well over one hundred children have died. It is never something that one can predict yet each loss reverberating through our community. I have cried over children I have never met, cried over children I have held in my arms. Each sweet face leaving their imprint on the earth, on their family and the community. Tears flowing, often inconsolable, as families need to restructure their lives without their child. The lack of the sounds that we have become so accustomed to, a ventilator, suction, and other pieces of equipment that keep their precious souls alive.

It is in times of silence that the tears come. Sometimes hidden from others, crawling in a ball and surrounding oneself with silence. Other times the tears come in heaping sobs, wracking one's entire body, inconsolable. Grief comes in many forms, tears when you see a child run by, tears watching children playing in the water, tears during sporting events, and sometimes every day things. Grief can be debilitating, making you climb into a hole so deep you're not sure that you'll make it out in one piece. Grief that no one can help you with. It like being engulfed by everything and to survive you are grabbing teardrops from the sky.


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